Monthly Archives: August 2013

There’s Sick and Then There’s Sick

I’m sitting here with my feet up, reading, catching up on the day’s news and an article caught my eye.  A lady with two special needs children found a nasty note on her car because she’d parked in a handicapped spot.  It brought to mind a blog post I’d read from a fellow RA sufferer (her blog is no longer available, hope she’s OK). She wrote about needing extra time to get to her seat in the movie theater and how other people gave her impatient stares.

And it made me remember being on a forum a long time ago and reading a teacher’s comments about RA. She wrote that it was very hard for her colleagues to understand how much pain she was in because she didn’t look sick. She wrote that she cried herself to sleep. I responded that my physical pain was so severe in the mornings, I cried myself awake.

That has to be what stings the most from this insidious disease. Unless we use something visible like a cane or a wheelchair, we appear perfectly capable to the naked eye. We don’t look sick.

But we are.

My feet are up after a busy morning. It started out with Tai Chi class, which is worth two feet and more. They didn’t hurt during the hour and a half that I was on them, shifting my weight from one to the other as I went through the moves.

And they didn’t hurt while I hung around discussing the needs of putting together the upcoming Fall Festival Banquet. I signed up for the setting up; I figure both quilts in my queue will be done by then.

Nor did they hurt while I shopped for more fabric. Put me in a fabric store and I’m like a kid in a toy store, or maybe the candy store. Who’s thinking feet?

But once I got home and took off my comfy tennis shoes, my feet said, Time out, Sister! I can walk, but I see stars. And no, I don’t need a cane or a wheelchair just yet. All I need to do is rack up a few hours’ rest and I’ll be good to go.

And there’s the difference between my sore feet and the author of that note. For that person, there might not be enough time for a cure.

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Falling Leaves

quilt designThe goal: to bring this pencil sketch into quilt reality.

It took all of an afternoon to bring what was in my head onto graph paper. And then a while longer to make the math add up so every piece of fabric will nestle precisely against the other.

It may now only be pencil lead on white paper, but in the unshaded areas I see a light green background upon which fragile leaves softly undulate as they fall.

I see rich brown borders, bronze in tone, depicting a boundary of welcoming soil upon which the leaves will land, knowing they only have so far to fall.

Within, the Flying Geese will move, resplendent in a wild array of fall colors, from blood red to golden yellow. The colors symbolize inevitable change as the geese fly to and fro along the confines, mimicking the ebbs and flows of life itself.

quilt fabricsThese fabrics will help me paint.

As they go through the auditioning process they will speak to me, or not. And as happens in life, they won’t all make the literal cut. But all will not be lost for they might foster ideas for another time.

And I know this lot will not suffice. Therefore, I will set out to hunt and gather additional fabrics as I search for more color, more vibrancy, more life.

About This Blog

I started this blog a long time ago. At first, I wanted to record and share how I dealt with RA. But then it hit me. It shouldn’t be about how to live with RA. It should be about how to live in spite of RA.

Every day I wake up and test the waters, so to speak. I don’t dip my toe in, rather I grab air with my hands. Most days I can grab a handful and make a fist. And then there are those days when I cannot. Even ignoring the pain doesn’t allow me to bend my fingers.

On those days it can take hours, sometimes four or more hours, before my hands loosen up and my fingers become pliable. This doesn’t mean I can’t do anything at all during these hours. It just means I can’t do anything that requires fine motor skills. I can’t go about using my rotary cutter to cut quilt pieces, or even chop vegetables, unless I want to run the risk of losing a finger, which I don’t.

Sometimes I look at my hands and remember all that they have done. From doing the simple, ordinary care for my own children to performing the intricate procedures required of me during my nursing life. I can no longer depend on my hands to allow me to function in that capacity. And it’s something I miss terribly. I was good at it, dammit!

But RA cannot take away my interactions with others. It cannot stop me from giving to others. It cannot prevent me from helping others, in whatever way I can.

This blog allows me to give, and take. It allows me to share and be part of a community. It gives me much satisfaction to learn from others and to share what works for me, what helps me. Though I do wish I had the answer to one of the most searched items on this blog: how to keep fingers from going crooked from arthritis. How I wish I knew the answer to that. I wish I had the secret potion. But, I don’t.

All I know is that we must stay active, our bodies as well as our hands. We must beat this uninvited adversary at its own game. If it takes motion away from us, we must stay in motion, always. And so besides exercise, I crochet, I sew, I quilt, I type, I write, and I blog about all those things. Perhaps at the risk of giving this blog a “flight of ideas” feel to it.

But all those activities not only help my body and my hands, they also help my spirit. Most days when I look at my hands, I see not only what they have done, but what they can still do.

On This Earth

A writer I much admire once wrote, “. . . waiting is the tense in which life is truly written.” Those words struck a chord with me when I read them three years ago. They’ve never left me. And sometimes when I am sitting in my rheumatologist’s waiting room, I think of how true those words are.

Reading Billies’ excellent post on waiting reminds me I meant to write about my time spent in that waiting room. While I was there in May, I came to the hard decision of looking for another doctor. Though things flow at a creeping pace at this office, I arrive on time at 3:30 p.m.

At 5:00 p.m. I see the front desk receptionist walk by me with her purse. She hasn’t yet taken my co-pay. I’d signed in and exchanged pleasantries with her and then taken my seat in the crowded waiting room. Deep into my reading, I only entertain a passing mental query as she goes by. After all, there is other staff.

At 5:30 p.m. the tech who does the preliminary workup, vitals and the dreaded weigh-in, sees me through the open sign-in window. “Did they pull your chart?” he asks.

I shrug my shoulders. How do I know?

He walks around and opens the door for me. “I’m sorry,” he says, as he escorts me toward the back. He chats with me as he works, asking how my writing is going. Fine, I say.

Before I’m shown to an exam room, I have to go up front and give my co-pay. “I can’t take a credit card. It’s after five,” says the young girl left at the front desk.

I shrug again. Not my problem. I’ve been there more than two hours by then. Somehow she gets it done.

I text my husband: “Two hours and haven’t been seen.”

“Unacceptable,” he fires back.

Sometime after 6:00 p.m. the PA comes in and makes himself comfortable. He takes an extensive history, dating from my last visit two months previously. He conscientiously taps onto his laptop my every utterance it seems. He asks me how to spell a word; I tell him. “I hate English,” he says with a sheepish grin. “It has its quirks,” I say.

He spends over 30 minutes with me, typing, chatting. I feel like I’m with family, the whole process is so familiar. With a shake of the hand he leaves me to my reading and waiting.

Around 7:00 p.m. my doctor walks in; smiling, he extends his hand towards me. He’s always smiling and he always shakes my hand. “How are you doing?” he asks. “Sorry about the wait.”

“It’s OK,” I murmur.

He meticulously reads what the PA wrote, then reviews certain comments/complaints. Satisfied with my responses, he asks me to step up onto the exam table.

He bends every one of my fingers by turn (ouch), then has me lie back and proceeds to bend my legs, my arms (no problem there), and listens to my heart, my lungs. He guides me to sit up and then checks my eyes and inside my mouth searching for RA’s sidekick, dryness of the mucous membranes. All checks out and he goes back to the desk. I step down and go sit across from him.

He checks his phone researching something for several long minutes, then comes to a decision regarding my current medications. He goes over the protocol with me. “You’re doing very well,” he says with that smile.

Returning his smile, I lock eyes with him for a moment. We are coming to the end of this slow-moving ballet we’ve engaged in for almost a decade.

And I remember why.

Because of him, I remain here, on this earth.

We shake hands and I make my way to the front desk. I schedule my next appointment, then exit the office. It is now 8:00 p.m.

Written for: Weekly Writing Challenge: Fit to Write

All Things Being Equal

wean sheet

My doctor is so conscientious. He made out this steroid wean sheet for me on my last visit. I’m making my way to Day Zero.

As I slowly say goodbye to my frenemy, Prednisone, my body is realizing something’s up.

This is a for-keeps kind of thing. I suppose it needs time to adjust. And it has started sending me signals, namely via hands and ankles.

Since I have a sore right thumb, I’ve taken to Ace-wrapping it, and of course my hand, for the night. Two mornings ago I woke up with a very painful left hand, but my right was A-OK.

I thought nothing of it, unwrapped my hand and got up to meet my day. I massaged my left hand at intervals and it took several hours for the pain and stiffness to go away. RA’s signature.

At the end of the day it hit me. Warmth. I’d kept my right hand warm encased in its Ace wrap all night. There was visible swelling along the base of the metacarpals, a definite RA calling card. But, it didn’t hurt and it didn’t affect my mobility.

 

Aha! I thought. What took me so long to figure that out? Nurse heal thyself.

sewing glove

I’ve had these gloves for many years and they still give my hands and wrists great support when I sew or quilt.

 

Since I was already in bed when the revelation hit me and my other Ace wrap had been left in my office, I opened my bedside drawer and grabbed my sewing glove.

It would have to do.

And it did.

This morning my hands felt equal. A little stiff, a little swollen, but barely sore. And most importantly, functional.

It’s all I ask.

 

 

 

And what makes me feel warm all over?

My little medicine  munchkin.

manicures

Blowing on her nails after Na did them. Another reason I need agile hands. To give my baby her manicures!

 

 

In So Many Ways

I’ve settled into a Tuesday and Friday Tai Chi class routine. Granted it’s only been one week. But it feels good. I’m renewing friendships and meeting new people. I met the lady who won my Native American Culture themed quilt at the raffle. (See my post, Done!) She was ecstatic and stopped the class to verify I was the quilter. “I love it!” she said. Talk about a shot in the arm, gave me renewed vigor to finish the class.

I’d wondered if my legs would hold up. It’s all a matter of shifting your weight from one leg to the other as you dance your way through the 108 moves. All this weight-bearing helps build bone, something mighty useful to me now. But I needn’t have worried, my legs remembered. They held up admirably, while the rest of me had a harder time remembering some of the hand moves.

Though they started the same week, these classes are independent of each other. That means that on Friday I get to repeat what I learned on Tuesday. This works well as I am a perpetual beginner, having yet to complete all 108 moves. Monday and Wednesday classes start in two weeks and I plan to take those too.  There’s nothing like reinforcement. And camaraderie.

And I have another reason for taking all these 10:00 AM classes. They will help me to structure my day so I can fit the most into it. Freelance editing is occupying more and more of my time, and that’s a good thing. But working from home, I’ve let myself maintain a non-schedule schedule, working all hours of the day or night. There’s been no clock to punch, and no boss but my lenient self. As long as the deadline is met, your client doesn’t care when you work.

But now, I need to adopt a daily discipline so that I can accomplish all I want to do. Such as my own writing (my WIPs won’t write themselves, sigh), and then there’s my quilting. I do want to keep up with it, and I plan to make a bunch of children’s quilts for the homeless shelter our Tai Chi Branch supports. For Christmas.

So you see, Tai Chi to the rescue. In so many ways.